Published: 01/10/2020 Tags: The Ehlers-Danlos Society News

The Ehlers-Danlos Society to host its first virtual EDS ECHO Summit 

The Ehlers-Danlos Society is delighted to be hosting its first-ever virtual EDS ECHO Summit: A Virtual Scientific Meeting on EDS, HSD, and Comorbidities on October 2-3, 2020.

The EDS ECHO Summit was created to run in between our in-person International Symposiums that take place every three years. It is important to us to ensure a global scientific conversation takes place each year, and at a time when virtual connections are stronger than ever, now is the perfect time to launch this new effort. We want to reach as many professionals across the world to discuss these important topics in an environmentally mindful way, and using the Project ECHO framework to encourage this dialogue made complete sense. The Project ECHO framework seeks to address population health in a scalable way — moving knowledge instead of patients via telementoring and collaborative care. The ECHO model is not “telemedicine” where specialists assume the care of the patient; it is a guided model aimed at practice improvement, in which providers retain responsibility for patients, and gain increasing independence as skills, confidence, and self-efficacy grow.

This year’s summit explores the most up-to-date knowledge of, and research into, the association, causation, and management of comorbidities seen in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). 

The two-day event will see over 200 medical professionals from around the world hear 23 guest expert and abstract presentations, along with abstract posters, from various disciplines including; ear, nose, and throat, neurodiversity, urological complications, gastrointestinal disorders, and respiratory concerns. Project ECHO® designates this live activity for a maximum of 14.5 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

A focus on improving the quality of life is a sentiment that will be echoed throughout the speakers’ presentations, with the importance of a multidisciplinary team approach when dealing with any one issue in a person with EDS and HSD.  Similarly, many speakers will touch on the importance of treating each person individually, and with respect of their health journey thus far. Professor Vik Khullar cites that generally, a person will have suffered with incontinence for around twelve years before they go to see a doctor and that they will take around two years from deciding to see a doctor about these issues to actually seeing a doctor. Keynote speaker Dr. Cathleen Raggio will also state the importance of looking at a person as a whole rather than just at their EDS symptoms when speaking about making an informed decision around orthopedic surgery; identifying the goals of the surgery and ensuring all other non-surgical options have been exhausted first. 

Dr. Alan Hakim, convenor of the Summit and Lead for the Society’s ECHO programs states; “There is no doubt that people with EDS and HSD can have complex sets of comorbid concerns that substantially negatively impact their physical and mental health and quality of life. They will present in primary/community care, and secondary/hospital care, and potentially to many different specialties depending on the nature of the concerns. Their assessment first requires that clinicians recognize that these concerns are real and co-exist; and that care requires a coordinated, multidisciplinary approach.”

Registration at this event will remain open. Learn more and view the event agenda here. 

Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

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